How to Meet Others with IBD

I was diagnosed with ulcerative colitis in 2010, and at the time, I didn’t know anyone with my condition. Because I was constantly flaring, I couldn’t do things that other people my age were doing. I declined invites so often that eventually my friends stopped asking altogether. Sure, I could have explained my situation to them and hoped they understood, but we were young. I didn’t want to limit my friends the way I had already limited myself. That just wasn’t fair to them.

At the end of 2014, I had my colon removed after years of having an active flare and never achieving remission. I was so bored after surgery, because although I had limited myself, I was still pretty active. I worked full–time (had to go on leave), I played tennis (had to stop for a bit), I took singing lessons (I shouldn’t have tried that, anyway) and dance. Long story short, I was bored.

The bedbound lifestyle was not something I was used to, but I was much too tired to do anything else. So, I decided to start my very first blog, entitled, “Living with Colitis Daily.” My blog was a place for me to release my innermost thoughts. It was a place to share my true feelings and what my life is really like, because for much of my life, I was pretty much living a lie. I was hiding my condition due to the fear of embarrassment and judgment.

It was at that time that I made my very first IBD friend, Amber. She stumbled upon a YouTube video I had done talking about my surgeries and she reached out. I am so glad that she did! Talking to Amber was like lifting a weight off my shoulders. Not only did Amber have IBD, and not only did she have ulcerative colitis, but also she had the same surgeries (IPAA, J–pouch) that I was having! It felt so good to finally talk to someone who could not just empathize, but really relate.

I was lucky enough to hang out with my IBD BFF in person at a patient advisory board meeting.

Making friends with IBD.

After meeting Amber, I realized how it important it is to befriend people who can understand and relate to living with IBD. I soon discovered how to meet other people with IBD, and took value in our friendships.

How to meet others with IBD

Start a blog: As you can see from my story, starting a blog can help you network with more people in addition to giving you a space to write about your emotions. It allows people with similar experiences to learn more about you and connect as well.

Network: More people have IBD than you may think. I recently found out that the woman who sits in front of me at work has ulcerative colitis. You never know what people are going through just by looking at them, so get out and get to know someone. (If you’re unable to leave your home, social media works just as well.)

Support groups: Support groups can be an excellent way to talk to people who can relate. Organizations like the Crohn’s and Colitis Foundation have information on where and how you can join.

Organizations and corporations: If you’re looking for something to do, you can volunteer or apply to work for organizations that provide support for people living with Crohn’s, colitis, and other forms of IDB. You can look into the Crohn’s and Colitis Foundation or even join ImproveCareNow’s Patient Advisory Council. We’d love to have you!

Facebook groups: Facebook groups are one of the easiest and most rewarding ways to connect with people. There are tons of amazing Facebook groups for IBDers! Looking for groups for people with Crohn’s? They have that! Looking for a group of people with J-pouches or ostomies? They have that too!

Hashtags: If you’re looking to connect with IBDers on social media, just search some popular hashtags. I’ll get you started: #GirlsWithGuts #GirlsWithoutGuts #IBD #InflammatoryBowelDisease #JPouch #Colitis #UC #Crohns #NoColonStillRollin #Spoonie… the list goes on. You can search for these hashtags on places like Instagram and Twitter.

Twitter chats: Twitter chats are probably the fastest way to meet a slew of IBDers at once. One awesome Twitter chat that I use is called #IBDSC. It stands for IBD Social Circle, where we discuss certain issues, stigmas, and other things that go along with having IBD.

Find other bloggers: There are a slew of IBD bloggers out there. You can follow their journey and reach out to them to connect as well. Here are a few bloggers to get you started: Amber Elder of Colitis Ninja, Ryan Stevens of Crohn’s Guy, Eric of VeganOstomy.ca, and Sara Ringer of Inflamed and Untamed.

What are some ways you’ve made IBD friends?

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Note: IBD News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of IBD News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to IBD.

3 comments

Hi! Thanks for the advices! I met other patients of IAD when I was in gastroenterology. Also, more than a year ago I created my blog about ulcerative colitis and Crohn’s disease, in which I share my experience with people. Maybe in the future I will translate it into English.

Great article. I am always looking for more info on this topic, especially for my 14-year-old son with Crohn’s. His recent flare hit him hard socially because he was Homebound and missed most of the school year, and the isolation from his friends hit him hard. I think he would relate to your experience, so thanks for sharing it, as well as suggestions.
I am cautious with FB for his age, but other sites may be better for a teen.

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Disclaimer:

IBD News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

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